Rants from a Special Needs Mother of a 6 year old Autistic daughter and a 2 year old son with Cerebral Palsy

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I have always been super ambitious. I always had more goals than anyone I ever grew up with and achieved them all. But then came along two little humans that changed everything. My daughter with High Functioning Autism and my son with Cerebral Palsy. My career stalled when my daughter was about 3 years old. I was unable to maintain my small business and handle her at the same time. In hindsight, that was one of the main red flags prior to diagnosis. I quit working all together after my son was born with brain damage. I knew we were in for a journey. Maybe I assumed that journey would end or something.

Fast forward, they were each diagnosed, and two years later I’m still out of the workforce. I convinced myself that I would start a new business I’ve wanted to do for a long time. The business idea is really great. I know the industry like the back of my hand. I have the experience, the education, the drive, everything. But, I can’t do it. And I’m just now coming to terms with it. This business would even allow me to be home most of the time with the kids with weekends away during the Spring. But, I can’t do it.

Autism is not easy to be around all day. Yes, she makes me laugh and I love her dearly. She also hits me, screams at me, puts holes in the walls, and just today decided to peel the paint off of our bathroom walls… again. She talks nonstop and she doesn’t give your mind a moment’s break. Then, her brother is there too. Cerebral Palsy can also have some autism-like symptoms like sensory issues. We spend a large majority of the day helping him to keep his voice in a regular volume level and convincing him that the small spec of dirt he sees is not in fact a bug. He has OCD-like behaviors that we are monitoring and possible seizure activity. He requires thickened liquids and leg braces. They each have weekly or biweekly therapies and all ten (yep, that’s 10) therapists give me homework. I have behavior charts, social stories, shudder activity charts, behavior analysis charts, etc…

By the end of everyday, I’m exhausted. My mind can’t tap into that well of knowledge I used to have somewhere. I can’t just pop into my office and work on building a major business. There are times I stop mid-sentence and can’t remember what I was talking about because the kids wear me down so much. Raising a special needs child is a lot. Raising two of them is worse. I think ultimately though, I’ve been stressing myself out more by expecting myself to merge my old life with the new one. For some reason, today I came to terms with this. I can’t be the old me anymore.

I do grieve the old me. I guess after grieving the loss of the idea of having “typical children” I forgot to grieve my old life as well. It’s gone. I’m tens of thousands of dollars in student loan debt for a degree I may never actually use. But, I don’t regret getting it. I have an amazing entrepreneur talent that I used well for several years, but may never get to use again. I spent my entire life working towards a single goal – I achieved it, but expected it to stay in place. Apparently, that was not God’s plan for me. I’ve been thrown into this life I never imagined for myself. I hope that I can find the reason why He threw me here. Hopefully one day I can use my talents in this new life to help a greater good.

The picture above is a worksheet my daughter did in class. I’m proud of it because it shows her sleeping, her cat, and my husband and me with a heart above. (She didn’t want to include her brother apparently, but we’ll ignore that point for now). I’m proud of it because it portrays a loving home. It’s not much. But, if somehow between all the screaming the kids do, all the pain my son is in sometimes, the pain my daughter feels, the anguish they each go through, the constant therapies, and the constant trials – she feels like she is in a loving family. I couldn’t have created anything better in my old life.